[Senate Hearing 113-801]
[From the U.S. Government Publishing Office]
S. Hrg. 113-801
RENEWING THE CONVERSATION: RESPECTING
PATIENTS' WISHES AND ADVANCE CARE PLANNING
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HEARING
BEFORE THE
SPECIAL COMMITTEE ON AGING
UNITED STATES SENATE
ONE HUNDRED THIRTEENTH CONGRESS
FIRST SESSION
__________
WASHINGTON, DC
__________
WEDNESDAY, JUNE 26, 2013
__________
Serial No. 113-7
Printed for the use of the Special Committee on Aging
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SPECIAL COMMITTEE ON AGING
BILL NELSON, Florida, Chairman
RON WYDEN, Oregon SUSAN M. COLLINS, Maine
ROBERT P. CASEY JR, Pennsylvania BOB CORKER, Tennessee
CLAIRE McCASKILL, Missouri ORRIN HATCH, Utah
SHELDON WHITEHOUSE, Rhode Island MARK KIRK, Illinois
KIRSTEN E. GILLIBRAND, New York DEAN HELLER, Nevada
JOE MANCHIN III, West Virginia JEFF FLAKE, Arizona
RICHARD BLUMENTHAL, Connecticut KELLY AYOTTE, New Hampshire
TAMMY BALDWIN, Wisconsin TIM SCOTT, South Carolina
JOE DONNELLY Indiana TED CRUZ, Texas
ELIZABETH WARREN, Massachusetts
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Kim Lipsky, Majority Staff Director
Priscilla Hanley, Minority Staff Director
CONTENTS
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Page
Opening Statement of Chairman Bill Nelson........................ 1
Prepared Statement........................................... 10
Opening Statement of Ranking Member Susan M. Collins............. 1
Prepared Statement........................................... 4
Statement of Senator Ron Wyden................................... 7
Statement of Senator Mark Warner................................. 8
Statement of Senator Joe Donnelly................................ 9
Statement of Senator Elizabeth Warren............................ 11
PANEL OF WITNESSES
James Towey, Founder, Aging with Dignity and President, Ava Maria
University..................................................... 12
Harriet Warshaw, Executive Director, The Conversation Project.... 23
Amy Vandenbroucke, Executive Director, National Physician Orders
for Life-Sustaining Treatment and Paradigm Task Force.......... 29
Gloria Ramsey, RN, Associate Professor, Uniformed Services
University of the Health Sciences.............................. 44
APPENDIX
Prepared Witness Statements and Questions for the Record
James Towey, Founder, Aging with Dignity and President, Ava Maria
University..................................................... 15
Harriet Warshaw, Executive Director, The Conversation Project.... 25
Amy Vandenbroucke, Executive Director, National Physician Orders
for Life-Sustaining Treatment and Paradigm Task Force.......... 32
Questions submitted for Ms. Vandenbrouck......................... 68
Additional Statements for the Record
Prepared statement of Senator Sheldon Whitehouse................. 59
Robert Fine, MD, FACP, FAAHPM, Clinical Director, Office of
Clinical Ethics and Pallative Care, Baylor Health Care System.. 77
Ashley Carson Cottingham, Director of Policy and Advocacy,
Compassion and Choices......................................... 82
RENEWING THE CONVERSATION:.
RESPECTING PATIENTS' WISHES
AND ADVANCE CARE PLANNING
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WEDNESDAY, JUNE 26, 2013
U.S. Senate,
Special Committee on Aging,
Washington, DC.
The Committee met, pursuant to notice, at 2:04 p.m., in
Room SD-124, Dirksen Senate Office Building, Hon. Bill Nelson,
Chairman of the Committee, presiding.
Present: Senators Nelson, Wyden, Whitehouse, Blumenthal,
Donnelly, Warren, Collins, and Ayotte.
Also present: Senator Warner.
OPENING STATEMENT OF SENATOR BILL NELSON, CHAIRMAN
The Chairman. Good afternoon. We have established a new
kind of procedure here. Sometimes, we give opening statements.
Sometimes, we do not. Sometimes, I turn to the most junior
members of the committee.
[Laughter.]
And I am going to have Senator Collins start out and then I
will make some comments.
OPENING STATEMENT OF SENATOR COLLINS
Senator Collins. First of all, thank you, Mr. Chairman.
This is typical of how gracious you are and the bipartisan
manner in which we jointly run this committee, even though you
are the Chairman and I always recognize that fact.
I want to thank you for calling this hearing to discuss the
importance of advanced care planning and to examine ways to
improve how we care for people at the end of their lives. These
are critical issues that at some point will confront each and
every one of us and I commend the Chairman for focusing the
committee's attention on them today. These issues also have
long been of personal interest to me. One of the first bills
that I introduced as a new Senator was called the Compassionate
Care and Planning Act, and I introduced it with Senator Jay
Rockefeller way back, I think, in the late 1990s.
Noted health economist Uwe Reinhardt once observed that
Americans are the only people on earth who believe that death
is negotiable. Advances in medicine, public health, and
technology have enabled more and more of us to live longer and
healthier lives. When medical treatment can no longer promise a
continuation of life, however, patients and their families
should not have to fear that the process of dying will be
marked by preventable pain, avoidable distress, or care that is
simply inconsistent with their values and their needs.
Unfortunately, most patients and their physicians do not
currently discuss death or routinely make advance plans for
their end-of-life care. As a consequence, about one-quarter of
Medicare funds are spent on care at the end of life that is
geared toward expensive high-tech interventions and rescue
care. While most Americans say that they would prefer to die at
home, studies show that the vast majority still die in
institutions, where they may be in pain and where they may be
subjected to high-tech treatments that merely prolong their
suffering.
We are making some progress in meeting the wishes of those
at the end of their lives. More people over age 65 are dying at
home and in hospice care and fewer are dying in hospitals, and
I want to make clear that for some people, dying in the
hospital is the right choice and the right option. But we
should be respecting individuals' wishes.
At the same time, a recent study published by the Journal
of the American Medical Association found that end-of-life care
continues to be characterized by aggressive interventions.
Increasing numbers of patients are receiving care in an
intensive care unit in their last month of life, and a growing
number are shifted back and forth between different care sites
in their final three months.
Moreover, while the study found that hospice use has
increased, more than 28 percent of hospice patients were
enrolled for three days or less. I was astonished by that
statistic, because I always thought hospice was supposed to be
for the last six months, not the last three days.
Clearly, there is more that we can do in this country to
improve the way that we care for people at the end of their
lives. Advance care planning has been shown to increase
satisfaction not only for the person who is dying, but for the
family members, as well, and it improves health outcomes
because people with advance directives are more likely to get
the care that they want in the setting they prefer and avoid
the care that they do not want.
Still, while 93 percent of Americans say that advance care
planning should be a priority, only about a third of us have
completed an Advance Directive.
I mentioned the bill that I introduced in 1997 with Senator
Rockefeller. It was intended to facilitate the discussions
about end-of-life issues with physicians and other health care
providers and encourage advance care planning. It required that
every Medicare beneficiary receiving care in a hospital,
nursing home, or other health care facility be given the
opportunity to discuss end-of-life care and the preparation of
an Advance Directive with an appropriately trained
professional. It also required that if the patient had an
Advance Directive, it must be displayed in a prominent place in
the medical record so that everyone caring for the person could
clearly see it. And last but certainly not least, it provided
Medicare coverage for advance planning consultations between
patients and their physicians.
Mr. Chairman, patients and their families should be able to
trust that the care that they receive in their final days is
not only of high quality, but also consistent with their
values, their wishes, and desire for autonomy and dignity. This
issue, I know, has been a high priority for you, Mr. Chairman,
for many years, as well. And again, thank you for calling this
important hearing.
[The prepared statement of Senator Collins follows:]
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The Chairman. Senator Wyden.
OPENING STATEMENT OF SENATOR WYDEN
Senator Wyden. Thank you very much, Mr. Chairman. Like
colleagues, I am under the gun, but Senator Warner was here
before me.
Senator Warner. Please go ahead.
Senator Wyden. Are you sure?
Senator Warner. I am not even on the committee. He is
letting me come.
Senator Wyden. Oh, my goodness. Well, first of all, let me
thank you, Mr. Chairman and Senator Collins, for your good work
on this issue. This is about making sure that our people have
all the choices they want, that they can get the services they
need when they need them. And I think it is important to set
out right at the outset that the good and bipartisan work that
Chairman Nelson and Senator Collins are doing is the opposite
of rationing. This is the opposite of rationing. They are
expanding services to vulnerable people and I commend them for
it.
Mr. Chairman, if I could, I just would like to introduce
briefly--we have got an Oregonian here who is part of a
pioneering effort. She is the leader in Oregon but also the
national leader of a very important program called POLST, and
it stands for Physician Orders for Life-Sustaining Treatment.
Ms. Vandenbroucke is here to tell the committee about POLST,
which is an approach to make sure that we can again emphasize
the wishes of the patient, that the patient is in the driver's
seat in order to get the kind of care that they deserve.
It is a holistic method of planning for end-of-life care
and also incorporates a specific set of medical orders that
ensure that the wishes of the patients are being honored. And
as we will hear from Ms. Vandenbroucke, it also helps to expand
conversations with family members and patients and others so
that everybody is trying to think through what kinds of options
and the extent of care they would like in various kinds of
situations.
And as a result of those conversations, patients can elect
to create a POLST form, which translates their wishes into
actionable medical orders. The form assures that professionals
are going to provide only the treatments that patients
themselves wish to receive and are in keeping with the goals of
their program.
Ms. Vandenbroucke has a J.D. from DePaul, her undergraduate
degree from Bucknell. We are very glad you are here.
I will only close by way of saying, Mr. Chairman, I think
it is particularly timely that you are looking now as we think
through what the next steps are in health reform. I was very
pleased that as part of the Affordable Care Act, we were able
to get something included that, for the first time, people who
sought hospice care would not have to give up the option of
curative care. Again, the opposite of rationing.
So I just commend you, Mr. Chairman, and appreciate your
letting me sort of parachute in here for a few minutes to make
an opening statement, and Ms. Vandenbroucke, we are very proud
that you and the POLST program are being featured today and we
thank you, Mr. Chairman.
The Chairman. And, Ms. Vandenbroucke, you realize that your
Senator from Oregon is the next Chairman of the Senate Finance
Committee.
Ms. Vandenbroucke. I did not. Thank you.
The Chairman. Senator Warner.
OPENING STATEMENT OF SENATOR WARNER
Senator Warner. Well, thank you, Mr. Chairman and Ranking
Member Collins. I also appreciate the courtesy.
I am not a regular member of the Aging Committee, but feel
this is one of the most important issues we have got to
address. I have tried to address it as a Governor and as a
Senator, but also as a son in a family where my mom had
Alzheimer's for ten years. The last nine years, she did not
speak. And our family did not grapple and do it right and we
know the anguish that particularly my father and my sister, who
were there 24-7 as caregivers, went through as we went through
her final days.
I want to pick up where Senator Collins' comments were,
because we are very much dovetailing that 93 percent of
Americans who say advance planning ought to be part of our
health care system. And what I also emphasize with Senator
Wyden is this is not about rationing. This is about expanding
options and honoring people's choices.
And picking up again where Senator Collins is, during the
last two Congresses, I have had legislation, the Senior
Navigation and Planning Act, which helped to try to grapple
with a lot of the very same issues. How do you get that
consultation? How do you make sure directives are honored
across State lines? How do you rationalize something that is
still a patchwork?
This year, I have been working with my colleague and good
friend Senator Johnny Isakson from Georgia, where we are
reworking and revising the language, and we are not quite ready
yet, but we do hope in the next couple of weeks to introduce
the Care Planning Act, changing the name, as well. And echoing
what everybody has said, it is to align the care people receive
with the care they want, no more and no less. The Care Planning
Act is not going to try to fix all the challenges of advanced
illness care but has targeted an effort that people, I think,
will most benefit from, which is a planning process for people
with advanced illnesses.
These are the people who have the greatest need to, one,
just understand their disease and what the potential outcomes
and timelines are; think about their goals, values, and
preferences, not only with medical professionals, but
oftentimes with their faith leaders; three, choose in that
setting with that consultation the care options that reflect
their goals, values, faith, traditions, and preferences. And
then, when they have made that choice, to find a way to
document that plan, and that, again, we have an enormous quilt
work of even the term ``advance directive'' is only a partially
used term in terms of different States do not even have that
terminology.
This legislation will also shore up the Patient Self-
Determination Act by requiring providers to provide qualified
assistance to individuals who want help and by requiring
discharge planners to assure that that care plan travels. Too
often, we have somebody who may have had some advance directive
in one State, but family members or others, they end up in a
hospital in another State and their wishes are not respected.
Some of the most fascinating conversations I have had at some
time have been with hospital system operators, and you get them
in a closed room and they will acknowledge that this is not
handled in an appropriate way.
I remember, as well, before I close here, that I had a
series of meetings with faith leaders, and I remember one
minister at one point saying, acknowledging that they were
pretty good about the business of taking people through life
and they were pretty good about people in the afterlife, but
they did not really have a very good job of taking people
through the transition. So we do think--at least I believe--
that faith leaders have an important role to play.
So I want to again thank the Chairman and the Ranking
Member for holding this important hearing and I look forward to
hopefully having the opportunity to participate.
The Chairman. Senator Donnelly.
OPENING STATEMENT OF SENATOR DONNELLY
Senator Donnelly. I am happy to participate in this and
ready to listen to our witnesses.
The Chairman. Okay. And I, too, and without objection, my
opening statement will be entered into the record.
[The prepared statement of Chairman Nelson follows:]
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The Chairman. I think it is worth noting that only 29
percent report having a living will that states what their
wishes are in end-of-life care, and that was one of the reasons
I had a little bit to do with when Ron Wyden and I were doing,
in the Finance Committee, the health care bill, of getting in
there where there would be a consultation on advance
directives. And what we got in the bill was that that was going
to occur on the first consultation with regard to Medicare,
when a person became eligible for Medicare. But since then, we
have tried to get CMS to put the advance care planning as a
part of an annual consultation and CMS removed it. We also want
to get the Department of HHS to update its research on advance
directives.
So, we have a star-spangled board here of witnesses to talk
to us, and first, we are going to hear from Jim Towey. He
served in official positions. He has been on the staff of
Senator Bob Graham. He served as the Director of the White
House Office of Faith-Based and Community Initiatives. He has
been the president of a small Catholic college in Pennsylvania.
He is now the President of Ave Maria University, which is near
Naples, Florida. He is a Floridian and, in the fairness of
disclosure, he is one of my dear personal friends who uniquely
brings to this discussion today the creation of an advance
directive called Five Wishes, which is distributed around the
country.
We also have Harriet Warshaw. She is the Executive Director
of The Conversation Project. It is dedicated to helping people
talk about their wishes for end-of-life care.
And then we have, as Senator Wyden has already introduced,
Amy Vandenbroucke, Executive Director of the National Physician
Orders for Life-Sustaining Treatment Paradigm Task Force. And
so you bring another unique perspective.
And then we have Gloria Ramsey, a Registered Nurse, an
attorney. Dr. Ramsey is recognized nationally for her
leadership in the areas of end-of-life care, health
disparities, working with vulnerable populations, particularly
African Americans and disabilities. Dr. Ramsey, instead of
reading a prepared statement, I would appreciate it, after you
listen to the other three testimonies, which will all be of
about five minutes in length, if you would comment on what you
have heard and provide your expertise as a nurse and a medical
researcher.
And we have been joined by the very happy and smiling
senior Senator from Massachusetts.
[Laughter.]
Senator Warren. Yes.
The Chairman. Senator Warren, would you like to make a
statement, and we are ready to start with our witnesses.
OPENING STATEMENT OF SENATOR WARREN
Senator Warren. Thank you very much. I appreciate it, and I
apologize for being late. We have activities, and I am going to
have to excuse myself before we are all through. This is also
Senator Cowan's last day and he will be making his remarks from
the floor----
The Chairman. Yes.
Senator Warren [continuing]. So I will be joining him.
But I do want to thank you and I want to thank Ranking
Member Collins for scheduling this hearing and for reopening
the conversation about advanced planning for medical treatment.
Too often in today's health care system, medical care is
focused on treating a disease, not on helping an individual
patient. It used to be that a family or town doctor would treat
a person for most of their lives for any medical issue. People
and their doctors built up strong bonds over time and
physicians knew their patients as unique individuals.
Advancement in science and medicine gradually caused more
and more doctors to begin specializing and only treating
certain diseases or certain parts of the body, and now,
according to the CDC, only 56 percent of office visits are to a
primary care doctor. Patients, especially seniors, see several
specialty doctors each year that focus on different aspects of
the individual's clinical needs.
So, we are slowly gaining evidence that coordination among
doctors giving specialized care can improve a patient's quality
of life and keep people healthy longer. I am proud that
Medicare demonstrations like the Care Management Program at
Massachusetts General Hospital are contributing to this
evidence and improving our outcomes for seniors. Through the
Affordable Care Act, we are encouraging even more coordinated
care through medical homes and Accountable Care Organizations.
But in all of the talk about improving coordination and
quality in health care, I think we have missed something
vitally important, something we used to know way back when we
had only one town doctor. Patients need to be treated like
whole people, people with loved ones and families, people with
dignity and values, not like a collection of parts and
problems. Somehow, we need to make sure that people are still
being heard in medicine.
So I am looking forward to the testimony of our witnesses
today, hearing about the tools that we have available to help
patients participate in medical decision making along with
their physicians and their loved ones, and about what stands in
our way so we can begin to work through the barriers and ensure
that our seniors' voices are being heard.
I want to thank you all, and again, thank you, Mr.
Chairman.
The Chairman. Thank you, Senator Warren.
Senator Ayotte, we are already teed up, ready to go, but we
want to hear any comments that you have prior to their
testimony.
Senator Ayotte. I will just wait for the questions. Thank
you very much for this hearing.
The Chairman. Yes, ma'am.
Okay. Mr. Towey.
STATEMENT OF H. JAMES TOWEY, FOUNDER, AGING WITH DIGNITY, AND
PRESIDENT, AVE MARIA UNIVERSITY, AVE MARIA, FL
Mr. Towey. Thank you, Mr. Chairman and members of the
committee. It is an honor to be here before you. I am happy to
be the warm-up act for this distinguished panel, and it is also
good to be back working here in the Senate after working for
Senator Hatfield seven years. I was here when the Hart Office
Building opened, so for me to be here before the Aging
Committee is also appropriate. It is holding up better than I
am.
[Laughter.]
But getting old or becoming ill is not a curse. It is part
of life, with its own unique blessings and demands, and people
should not dread old age. But why do so many? In part, I think
it is because our health care system has turned dying into a
medical moment and has many who are ill feel powerless, as
though they are objects on some health care conveyor belt. So
dying in America is too often characterized by poor pain
management, loneliness, and spiritual starvation.
From the beginning, Aging with Dignity was an advocate for
consumers and individuals, particularly the disabled and the
poor, who had the most at stake, arguably, when it comes to
preserving their fragile human dignity. From the day in October
1998 when the late Eunice Kennedy Shriver and I launched Five
Wishes, I have witnessed firsthand the need for people to have
advance directives and also their reluctance to engage in
discussions with family members and medical personnel about
their wishes during times of serious illness.
So I would like to turn to the topic of advance care
planning first by citing some of my thoughts on how it came
historically. Of course, when it started with Living Wills,
very few used them and they were written in language that was
beyond their reach, often by lawyers and individuals with
graduate educations. And so you saw that this led to the
Patient Self-Determination Act, which was a very important act
of Congress in 1990 and placed the primary role of decision
making with the patient and his or her designees.
Over the past 15 years or so, advance care planning
policies generally improved in ways strengthening patient
rights, and I think Five Wishes has been part of that
nationally. When I began this project with Five Wishes, there
were 17 States that required you to use a mandatory form, and
now there are only eight States, and Charlie Sabatino here from
the American Bar Association has been a real leader in that
movement. But what has often happened seems to fly in the face
of the Patient Self-Determination Act and what happens with the
protection of patient wishes.
So I think that while we have seen progress with advance
care planning, we are also seeing novel improvements and novel
challenges. Certainly, POLST has a lot of promise, and I
commend the work of my colleague here in advancing POLST,
because unlike advance care directives, POLST does not require
interpretation. It is an actionable medical order. And I think
that that is great. I think for you to have a physician order
in place during times of serious illness is important. And I
think that we also have to be very mindful that if you have
POLST used in situations other than when individuals might be
in their last year of life, you could run into differing
opinions on its usefulness, especially whether a patient's
family members were consulted or not, because I think there is
a lack of consensus on how far upstream POLST can be used and
should be used and whether there are other concerns that would
be of importance to Congress.
So I am going to raise, simply, five points really quickly
on POLST. I think that the order should clearly note it is
intended for people diagnosed with a life-threatening illness
that could lead to their death within the next year. That is
how POLST began. I think it is important to keep it moored to
that.
I think the order should include space to describe
qualifying conditions and diagnosis, so if the patient is seen
also by another physician in the future, it is easier to
determine the qualifying conditions and the wishes of the
patient.
I think that the order should note who discussed this with
the patient.
I think, also, POLST should not deny the rights of health
care surrogates and the individual's right to designate an
individual to speak for them when they cannot speak for
themselves.
And, of course, it should not be effective indefinitely.
Finally, I would like to simply say to this committee that
I applaud your leadership, Mr. Chairman. Back in 2005, when you
first sponsored legislation to add advance care planning as one
of the items discussed in the ``Welcome to Medicare'' visit,
and I urge your continued efforts and success. We know that
this can become a real flash point in the public square. It
happened with the Affordable Care Act. It could happen again if
there is not a thoughtful discussion like we are seeing today
by this committee.
Finally, I would just like to simply say in the way of
recommendations that I hope that you consider national
legislation to affirm the Patient Self-Determination Act, that
you make advance care planning consultations reimbursable, that
you members lead by example and have yourselves and your family
members and staff members availed the opportunity to do advance
care planning. I am happy to provide Five Wishes. You will not
have to disclose it on a gift form. We give them away free when
needed. And, also, I am hoping that as POLST is developed and
further integrated in our health care systems, that it is done
in a way that stays true to why it was introduced in the first
place, which I think was a necessary improvement on helping
families get the kind of end-of-life care they want in a care
setting.
So with that and my time up, I want to simply thank you for
this opportunity to come before this committee and to
participate in this discussion.
[The prepared statement of Mr. Towey follows:]
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The Chairman. Thank you, Mr. Towey.
Ms. Warshaw.
STATEMENT OF HARRIET WARSHAW, EXECUTIVE DIRECTOR, THE
CONVERSATION PROJECT
Ms. Warshaw. Thank you. And on behalf of Ellen Goodman, who
unfortunately cannot be here because she is in Barcelona today
at an international health care conference, and our Board of
Directors, I would like to extend our appreciation to the
committee for inviting us here today.
The Conversation Project is a national public engagement
campaign dedicated to helping people talk about their wishes
for end-of-life care. We have a simple but audacious goal, to
assure that everyone's end-of-life wishes are expressed and
honored.
The Conversation Project grew out of Ellen's personal
experience with her mother's journey through the health care
system. It was a journey that Ellen was not prepared for,
filled with many decisions about what kind of care her mother
would need since her mother was no longer able to make these
decisions for herself. Ellen was very close with her mom. They
talked about everything. But the one conversation they never
had was how her mother wanted to live at the end of her life.
After her mother had experienced what Ellen would call a
``hard death,'' leaving Ellen filled with uncertainty about
what her mom might have wanted, Ellen began telling her story
to her friends. To her surprise, she learned that others had
similar experiences with their loved ones. Ellen, being Ellen,
she looked for a path to see how she could improve the way
others experienced the death of a loved one.
Ellen reached out to a group of colleagues and concerned
media, clergy, medical professionals, to share stories of good
deaths and hard deaths within their own circle of friends. They
realized that the difference between the two experiences often
hinges on whether or not they had had the conversation. The
consensus from this group was that although some progress had
been made in the field of end-of-life care over the past 30
years, major change would not occur until there was pressure
from the outside pushing the health care system, respectively,
to be receptive to and solicitous of people's wishes for their
end-of-life care.
From this discussion, The Conversation Project emerged as a
grassroots engagement campaign to change the cultural norm from
not having the conversation to having the conversation around
the kitchen table with our loved ones long before there is a
medical crisis. To do this, we have embarked on a three-part
strategy using traditional and new media, collecting stories of
good deaths and hard deaths to share with others, and to make
The Conversation Starter Kit tool accessible to people where
they live, where they work, and where they pray.
Our hope is that our work will give people the confidence
and courage to have the conversation about their end-of-life
wishes, first with their families and then with their health
care providers, long before there is a health care crisis.
We have been overwhelmed by the public's response to The
Conversation Project. Since our official launch in August of
2012, our story has been covered by 200 news outlets, including
the New York Times, the Wall Street Journal, ABC News and World
Report. Our innovative Web site has been visited by over
100,000 people in the first six months, and strikingly, almost
50 percent of those who have visited the site have downloaded
the starter kit and other tools. We have been asked to speak in
front of national, State, and local organizations, businesses,
and health care communities.
What we have learned during the past ten months is that we
have touched a tender nerve within the American public. There
is a deep desire to have end-of-life conversations with our
loved ones, but people do not know how to begin. This
disconnect is consistent with the findings of the California
Health Care Foundation, which found that 60 percent of people
say that making sure that their family is not burdened by the
tough decisions is extremely important. Yet, 56 percent have
not communicated their end-of-life wishes to their loved ones.
We know that in Massachusetts, 17 percent of people have
had end-of-life conversations with their physician. And in
California, only seven percent. As a result, while 70 percent
of people say they prefer to die at home, surrounded by their
loved ones, the reality is that 70 percent are spending their
last days in hospitals and other health care facilities.
We have learned that our goal that people expressing end-
of-life wishes resonates with communities across the country.
We have been welcomed into California, into Contra Costa
County, to work with medical societies, businesses, faith-based
communities, to make the county conversation ready. We have
been asked to convene and speak at educational forums in
Boulder, Colorado, that was started by residents and in a forum
that had over 300 residents in attendance. We have spoken at
day-long forums at Wake Forest University sponsored by the
Medical School, the Divinity School, and the Center for
Bioethics. And there is now a pipeline of communities from the
State of Rhode Island, to Kennebunkport, Maine, to Akron, Ohio,
to Chicago, Reno, Tucson, Portland, Oregon, and the State of
Hawaii, all who want to initiate The Conversation Project.
One thing is for sure. No matter where we live, no matter
what side of the political aisle one sits on, we have, each of
us, experienced, or will experience, the death of a loved one
as well as our own mortality. The question for each of us is
what we want for our care towards the end of our life and how
we are going to assure that the wishes of our loved ones and
ourselves will be expressed and honored. We believe that the
best place to start is around the kitchen table, having an
honest and open conversation with those we love. Our simple
transformative goal is that we will be asking, have you had the
conversation, and hear in response a resounding, ``Yes.''
And so, our question to each of you here today,
respectfully, is have you had the conversation? Thank you.
[The prepared statement of Ms. Warshaw follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
The Chairman. I have had part of the conversation.
[Laughter.]
Ms. Warshaw. We will help you with the other part.
The Chairman. And, having gone through the loss of a couple
of family members recently, I cannot say enough good things
about hospice and especially when you try to create the
environment that you are speaking about----
Ms. Warshaw. Absolutely.
The Chairman [continuing]. At home, surrounded by the
family and the loved ones, and that, in what is otherwise a
painful experience, is a positive experience.
Ms. Vandenbroucke.
STATEMENT OF AMY VANDENBROUCKE, EXECUTIVE DIRECTOR, NATIONAL
PHYSICIAN ORDERS FOR LIFE-SUSTAINING TREATMENT PARADIGM PROGRAM
Ms. Vandenbroucke. Thank you. Even though he is gone, I
want to thank Senator Wyden for his kind introduction.
Chairman Nelson, Ranking Member Collins, and other
distinguished members of the committee, thank you so much for
having me here today. My charge is to describe the POLST
Program to you.
As you have heard, POLST stands for Physician Orders for
Life-Sustaining Treatment and is a specific set of medical
orders that document the treatments that a patient does or does
not want in the time of a medical crisis. As detailed in my
written testimony, it provides orders to health care
professionals, including emergency personnel, on resuscitation,
other medical interventions, antibiotics, and artificially
administered nutrition.
The POLST Program is not just a specific set of orders on a
form. It is also an approach to end-of-life care planning based
on conversations between patients, health care providers, and
loved ones. It was created over 20 years ago by a multi-
professional task force convened by the Center for Ethics at
Oregon Health and Science University in Portland, Oregon. POLST
was subsequently adopted by Oregon's medical profession,
ensuring that health care professionals could honor the
treatment preferences of patients diagnosed with serious
advanced illness, regardless of where the patient is during an
emergency.
The POLST Paradigm Program has developed through grassroots
approach in some States, like Oregon, and through State
legislation and regulation in others. In 2004, the National
POLST Paradigm Task Force was created to develop a set of
standards for POLST Programs. The Task Force is charged with
endorsing programs when they have proven that their program
falls within those standards. Currently, we have 16 States that
have endorsed programs and we have 25 States that are working
towards this endorsement.
The Task Force also mentors States developing POLST
Programs, States like Maine, Senator Collins. Thanks to the
Retirement Research Foundation, Maine's coalition received a
three-year grant to develop their POLST Program in accordance
with the national standards, and my predecessor, now me, has
received funding to formally mentor Maine. And through this,
they have been able to develop their program, and this year, I
will be helping them submit their application for endorsement.
There are several other States that also receive funding, such
as Florida, Pennsylvania, Rhode Island, New York, West
Virginia, Connecticut, Tennessee, Illinois, New Hampshire, and
others.
In Mr. Towey's testimony, you did hear about advance
directives, and in my written testimony, I describe the detail
between--the differences between POLST and advance directives,
but I want to highlight two here.
First is the target patient population. While all competent
adults should be encouraged to have advance directives, the
POLST form is not appropriate for everybody. It is only when a
patient is diagnosed with a serious advanced illness that a
POLST form would be appropriate. For those patients, they are
able to consider their specific diagnosis and prognosis and
their goals of care and then complete a POLST form so that they
have standing orders for emergent or future medical care
reflecting those goals.
The second is that this is a medical order signed by a
health care professional giving orders. POLST forms turn the
wishes expressed in an advance directive into action as a
medical order.
Max's story, which I included in the written testimony, is
a great example of when an advance directive is not enough. He
had clearly documented his decisions on the treatments he did
not want to receive when he was diagnosed with progressive
heart condition in an advance directive, but when he collapsed
as a result of that condition, the EMTs responding were unable
to honor his wishes because they did not have a medical order.
And for EMTs, when they are responding in a medical emergency
in Oregon, they need to have medical orders. Otherwise, they
have to do everything possible to attempt to save a person's
life. And the POLST form can convey those orders. Max's death
would have been very different if the responding EMTs had had
the POLST orders to direct his care. He would have been allowed
to have the natural, peaceful death that he so greatly desired,
and his family would have had the comfort of knowing that his
wishes were honored and respected.
There is still work to be done. As you likely know,
electronic medical record systems can be complicated, and even
though a record can be in the system, it may not be easily
located. Although POLST is primarily a State effort, we invite
the committee's endorsement of a uniform standard for
electronic medical record systems to ensure that documents that
are needed at the time of an emergency to honor a patient's
autonomy are easily found, ideally with a single click.
Four final observations about POLST. First, comfort
measures are always provided. In fact, research now shows that
a patient with a DNR and a POLST form is likely to receive more
palliative care than those with just a DNR.
Second, POLST is voluntary. The POLST--the National Task
Force does not endorse or encourage programs where the
completion of the POLST form is mandatory.
Third, POLST can be easily modified or revoked. The Oregon
registry shows that about 15 percent of all POLST forms
submitted each month is a modification of a previous form. So
as a patient's disease progresses, their care goals can change
and their treatment preferences can change, so it is
fundamental to the POLST Program that we allow for that.
And, finally, this is the patient's voice. Either the
patient is the one having the conversation with the health care
professional filling out the form or their surrogate is. So if
the patient's voice is not heard, the surrogate is the person
to look to. By encouraging the advance care planning
conversation between health care professionals and patients and
by completing a POLST form when it is appropriate and desired,
we are respecting patient autonomy.
I appreciate the opportunity to be with you today. Thank
you.
[The prepared statement of Ms. Vandenbroucke follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
The Chairman. Thank you, Ms. Vandenbroucke.
All right, Professor. You have heard the testimony of the
previous witnesses. What do you think? How would you advise us?
STATEMENT OF GLORIA RAMSEY, R.N., ASSOCIATE PROFESSOR,
UNIFORMED SERVICES UNIVERSITY OF THE HEALTH SCIENCES
Ms. Ramsey. Great. Thank you. Thank you, Mr. Chairman,
Ranking Member Collins, and distinguished members of the
committee. I am really pleased to have the opportunity to speak
with you this afternoon and to comment on the testimony that we
have heard thus far, and also to have an opportunity to share
with you some of the research that I have been engaged.
I would like to begin with the comments or the testimony
from Mr. Towey. At the onset, we heard about individuals who
are poor, who are disabled, and who are powerless. It is the
vulnerable populations that I would like to underscore that
have not been a part of the discourse over the years. Although
the PSDA was passed in 1992, as Mr. Towey said, not all
communities have been a part of the conversation.
I would also like to comment with Ms. Warshaw and The
Conversation Project and the idea that this is a grassroots
effort, and believe me, change comes from the grassroots
community, that the cultural norm needs to change, that these
conversations need to happen where we work, where we live, and
absolutely where we pray. My research largely embraces the
faith community, and I will share that in a bit.
Also, I would like to underscore that there is a deep
desire to have the conversation, but individuals, even health
care professionals, need assistance. They need help in how to
begin the conversation, and that is equally important. And
having it at kitchen tables sounds like a really great place,
before the crisis, before the medical event when everyone then
is uncertain about what is afoot.
And, lastly, Ms. Vandenbroucke's comments about the POLST
and really introducing yet another opportunity to engage the
patient and the patient's voice.
And it is all of these efforts that, I submit, are
important for us as we renew the conversations that we have
been charged with today, and we thank you for the opportunity
to revisit some of what has occurred.
And to that end, I would like to say that the views
expressed are personal and do not reflect those of the
Uniformed Services University of the Health Sciences or the
Department of Defense.
As I think about my own work, certainly starting in 1992
with the U.S. Supreme Court's decision in Cruzan v. Director,
Missouri Department of Health, and the Congress' passage of the
PSDA, this was a wonderful opportunity, if you will, to begin
to inform patients of their rights to accept and refuse medical
and surgical interventions.
Today, we have heard statistics about the number of persons
who are completing those, and I will certainly say to you,
those who come from racial and ethnic diverse backgrounds as
well as persons with disabilities, those numbers are far less.
And since passage of these laws and in recent years, recent
studies report on the differences in decision making among
racial and ethnic populations and patients with disabilities,
and generally speaking, patients facing end-of-life care have
the need to feel a sense of control, to have their pain
appropriately assessed and managed, and as Senator Collins
said, to be treated with respect and as a whole person.
Barriers to quality end-of-life care for African Americans
stem from mistrust of the health care system, inability to
access health care, inability to identify with providers, and
the lack of financial resources, especially as death
approaches. In my own research, we found significant
differences between whites', non-Hispanic whites', and blacks'
completion of advance directives and even their willingness to
engage in health care planning conversations. Many feel that if
they complete directives, that would be tantamount to an
abandonment of care.
So there is much to be done as we think about the health
disparities that we see across our country, and yet the
opportunity for us to really begin to elicit the patients'
perceptions, beliefs, and values.
In conclusion, African Americans and other racially and
ethnically diverse populations' shared experiences, beliefs,
and values influence their willingness to participate in
advance care planning discussions, and advance care planning is
an urgent public health concern and I thank you for renewing
the conversation.
[The prepared statement of Ms. Ramsey follows:]
The Chairman. Excellent discussion.
Senator Collins.
Senator Collins. Thank you, Mr. Chairman.
Mr. Towey, I think that most people believe that advance
directives are used solely to give direction on the kind of
care that a patient does not want to receive. But, in fact,
they also, as your Five Wishes document shows, can be used to
direct the kind of care that they do want to receive. How do we
make sure that as health care providers discuss these issues
with their patients, that they do so in a neutral way and not
bias the decision one way or the other?
I heard part of an NPR story this week that talked about
how the way the question is asked can greatly influence the
choice that is made, such as if you ask, do you want us to
perform CPR if it means cracking open your ribs as we do so,
you get a different response than if you put it in a different
way.
Mr. Towey. Well, Senator, I think you have identified one
of the real defects with how Living Wills were promoted up
until very recently. They were biased in favor of only
communicating declination. I do not want this treatment. I do
not want that treatment. Well, this has been remedied. As you
said, Five Wishes now has let people choose to say, I do want
in this circumstance of if I am seriously ill.
I think beyond that, though, you get to the heart of the
question, which is trust. There is such a mismatch. Many
individuals have a crisis going on in their health before they
even have these discussions. Then they are dealing with health
care professionals that are speaking a language they do not
understand. They are facing a health care system that has
become increasingly more complicated. As a result, a lot of
distrust exists. People feel mismatched and inadequate to the
conversation.
I think the nice thing about The Conversation Project and
what we have been doing in Five Wishes since 1996 is pushing it
away from the emergency room and into the living room, the
kitchen, and so forth. But there is this trust element, which
is why a health care surrogate's role is very important. And so
often, if you do not have the conversation, then your surrogate
is in as much of the dark as the health care provider.
So I think that a good place to start, I think, would be
for Congress to communicate to States in some way that they
should not require individuals to fill out a form which says, I
do not want care in--in other words, a form biased the way you
describe. Currently, there are eight States that require you to
fill out a State form. It is usually long. It is usually
impossible to decipher by all but the most educated. And it is
often of little or no use to health care providers.
So a good start would say for the States to understand that
these old vestiges of the past, where you have these antiquated
Living Will statutes, give way to the more modern approach that
lets people put their wishes in their own words. Let them have
conversations, reduce it in writing, and communicate it to a
health care surrogate, their health care professionals. That is
the preferred route to go.
Senator Collins. Thank you.
Ms. Vandenbroucke, I was fascinated and touched by the
story of Max that is in your testimony because it is so
disturbing because he ended up getting care that was completely
inconsistent with his wishes, and yet he had done everything
possible to prevent that. You say in your testimony that EMTs
have no choice but to do everything possible to save a life
unless they have medical orders to the contrary, and I gather
an advance directive is not considered to be a medical order,
because you mentioned that his wife shows up with the advance
directive and it does not do any good.
I guess what I do not understand is how would the POLST
system solve that? I mean, you are not going to be carrying the
orders with you.
Ms. Vandenbroucke. Well, you could.
Senator Collins. But that is pretty unlikely----
Ms. Vandenbroucke. It is unlikely, I absolutely agree. So,
you are right. To reiterate, the POLST is a medical order. It
is not an advance directive, so advance directives are signed
by individuals. A health care provider may never see it until
there is a time of crisis and someone happens to be able to
locate it at the time. But a POLST is a medical order signed by
a health care professional.
So in Max's situation, if his wife had shown up, and this
is our bright pink form, with it, then they would have said,
okay, yes. We have got these medical orders. It is signed by a
professional, a health care professional, and we are able to do
what this form says to do or not to do.
In Oregon, we do have a registry, so there are also certain
situations where emergency personnel show up, and in this
situation, if Max had completed a form but no one had it with
them, which would be reasonable, they could say, he has got a
POLST form, and the emergency service people would call the
registry and the registry would say, yes, this is the
individual. Okay, he did not want CPR. He did not want this.
Or, yes, he wants CPR. He wants that. And they would be able to
act on those orders in the field at that time.
Senator Collins. Thank you.
The Chairman. Senator Warner.
Senator Warner. Thank you, Mr. Chairman.
I want to follow up with Senator Collins. I think, is this
not again one of the reasons why, though, we need some
incentives so that that POLST order can translate across the
State line? Could you speak to that, Ms. Vandenbroucke.
Ms. Vandenbroucke. Yes. So, we do have some States that
have put reciprocity for POLST orders into action, or into
their State legislation. Some States just do it from a
grassroots perspective. I know recently in Oregon, there was an
Oregonian that had been vacationing in Wyoming and they
happened to have their POLST form with them and they had an
emergency, and the Wyoming folks ended up calling the Oregon
registry, confirming that this was, in fact, a medical order,
and they were able to treat the individual based on their POLST
form at that moment.
But it is certainly something that we are looking to,
especially with the endorsed States. If you are a State that is
endorsed by POLST, you know that the form has certain elements
and certain things are not included on it, and so there is some
standardization across those. So it is pretty easy from a
reciprocity standpoint between those States, but as we are
building in other States, it is something that we are working
on.
Senator Warner. I would like to ask all of the witnesses,
perhaps starting with Professor Ramsey, but just one of the
things that we have been looking at in terms of--I think it is
great, you have got to start the conversation, maybe in one
setting, but then you have to then have that conversation with
medical professionals that then gets translated into this
medical order.
The thing that we have kind of drilled down on, and
starting with Professor Ramsey, but anybody could comment on,
is that we found even within the kind of reimbursement that
Medicare does right now, there is an availability to actually
have a consultive team so that it is not just simply--it may be
a nurse, it may be a social worker, it may be a doctor, so that
there is some ability to help this kind of translation issue.
Do you want to talk about that notion?
Ms. Ramsey. Yes, sir. That is important, because one of the
things we found in our work is that individuals from the
community would like to see individuals from the community,
individuals who they perceive understand their preferences,
their values, their social-economic status, their spiritual
beliefs, and the like.
African Americans do complete advance directives. We use
the Five Wishes document in our research, and more than 80
percent of our persons have completed those. So to get a health
care team who absolutely understands and appreciates the
diversity and the inclusivity and also the cultural nuances and
language considerations, as well, is important to really fully
engage, and the Five Wishes document, again, was certainly one
of those that was very successful in our community and that we
encourage our individuals to go to our local health care
facilities with the document and the team is educated to know
that it is a legally binding document and it is respected.
Senator Warner. I might just want to add, too, that one of
the things we are looking at adding in our team is that ability
to have that faith leader as part of that team, as well.
Does anybody else want to comment on that?
Mr. Towey. Yes, if I could just add to that, because I
think it is not only just an issue of trust, where individuals
want to believe that their wishes are going to be followed.
There is a concern if the conversation is being held with
individuals who have a financial stake in their decision. So if
an individual is saying, I want the works until the very last
breath, there is a financial dimension to that communication
versus one that says, no, I do not want my sternum cracked.
Please do not do this.
And so as you move upstream, and you have, I think, very
correctly said, Senator Warner, that you have got to go beyond
just filling out a document and having a remote conversation.
You actually have to have actionable plans, which is what I
think POLST came into existence to remedy and has done
effectively.
Beyond that, you have got to have parties involved that are
disinterested, that do not have a stake, that have no skin in
that game financially. Otherwise, there is a feeling that
people have that if they do not give the right answer, they may
have trouble in their health care setting if they are feeling
pressured to say, I do not want care. So that has been our
experience. I am not sure how to remedy it, but again, I think
the more communication is in place with the health care knowing
exactly what that individual wants, I think it helps them
further upstream when there is a crisis.
Senator Warner. But it is kind--and I want to hear from Ms.
Warshaw--but it is a little bit of you have both examples. You
have the example of someone feeling pressured maybe to kind of
check too many boxes, but I will tell you, you also hear lots
and lots from hospital systems where they will acknowledge
where the absent relative who has not seen Grandma for months
comes in feeling guilty and says, do it all. Disregard the wish
of the patient. And trying to get that right is a real balance.
Ms. Warshaw.
Ms. Warshaw. Thank you. I just wanted to comment, also,
about the need to help our health professional staff feel
comfortable having these conversations. What we have seen is
they are humans, just like us, and find it challenging to have
these conversations. And so we have been working with care
managers, physicians, asking them to take off their
professional hat, go through the starter kit, and experience
what it is like and how challenging it is to have these
conversations so that they then can lend that empathetic
understanding and be ready to receive this discussion with
their patients, because so few doctors feel comfortable
starting the conversation, so----
Senator Warner. Thank you, Mr. Chairman.
The Chairman. Senator Warren.
Senator Warren. Thank you, Mr. Chairman.
So, Ms. Warshaw, I appreciate your question, and you asked,
have we had the conversation. We should lead by example. I just
want to take this chance to say publicly, yes, I have had the
conversation. I had it twice.
My Aunt Bea started in about 40 years before she died--she
died at 98--having the conversation. She was a shy, self-
effacing woman, but she was determined that I would know what
she wanted when the time came. And when we lost my mother very
suddenly, my father after that insisted on having the
conversation. Both of them said, ``Betsy, we will be depending
on you.''
And I just want to say about the conversation, I had the
confidence that I was doing what Aunt Bea wanted, what my Daddy
wanted. It was their final gift to me, and that is what really
mattered about the conversation.
Ms. Warshaw. I have had it with my two adult children,
young adult, but adult children, and it was a hard conversation
to have because nobody wants to have this. No one wants to
think of their parents' mortality. But, to me, it is a gift to
them. It is unburdening making such difficult decisions. I
never want them to have any regrets, and I had wonderful role
models with my parents. Both of them have passed away, but I
knew exactly what they wanted, and the last period, their end
of their life, was a joy to be with both of them.
Senator Warren. Yes. So thank you. Thank you, and I
encourage everyone to have the conversation.
But what this discussion shows are the many benefits that
we have from treating the whole patient, and the quality of
life both for the patient and for the loved ones, and how we
should strengthen our ways for getting more information here.
And we have heard some great tools today. But the question I
want to ask is how we can improve our Medicare program to make
certain that seniors are being treated with dignity and
respect, receiving the quality health care that is consistent
with their individual values. You know, there is a lot of power
in Medicare and I just want to start there, if we can.
Dr. Ramsey, could you comment on that, please.
Ms. Ramsey. Great. Thank you. Again, in terms of my
personal opinion, in terms of what the Federal Government has
done, looking back in 1992 with the PSDA in terms of what were
some of the opportunities that this particular legislation has
provided, we have heard today that there is--Senator Warner is
working on proposed legislation. And so I think that each of
these that will have teeth, if you will, that actually
expresses some guidance, would be enormously helpful for us. I
think there was a lot of good that has come out of the PSDA.
Was it--did we complete our total objectives? Not so much, but
certainly, we are long on our way. So I think that in terms of
using prior laws, examples such as that particular Federal law,
will help us as you look forward with the current legislation.
Senator Warren. Thank you.
Mr. Towey, would you like to add anything on that.
Mr. Towey. Yes, Senator. It is the reimbursement system. So
you have got to incent good practices, and so there should be
review of how hospitals and care facilities and care providers
are doing with urging individuals to do advance care planning
and have discussions. Certainly, funding hospice in ways that
gets them an earlier encounter, an earlier discussion with
patients. They often are only brought in at the very end. There
is a bias--it has been documented by the Dartmouth research
that there is a bias toward hospitalization and curative care
to the point where individuals, had they known what they were
going to face the next 90 days, would not have tried radiation
a third time. But, often, this is not communicated. It is
simply a physician saying, we are going to try this.
So these conversations are best, I think, also incented in
medical schools, where you start training the next generation
of care providers to understand that if you are really going to
be in the caring professions, you cannot simply treat them as
an object for your health care practice, that you have to help
them understand, here is what is ahead if you choose this
option versus this option. Often, the patient has no access to
a physician, and so then the discussion is held by a social
worker who has no idea who the individual is and it is broken
down from the very beginning because their caseloads are too
great and they are not funded any more by Medicare.
So I think that a good way for Medicare to leverage its
money is to incent good practices and also for us to be doing
more with the medical schools to inform them about good pain
management and earlier referral to hospice and better
information for families and patients.
Senator Warren. Good. Well, I see my time is up, but I just
want to say, thank you all. Thank you for the work that you do
every day. And thank you again, Mr. Chairman, for reopening
this conversation for all of us.
The Chairman. Thank you, Senator.
Senator Whitehouse.
Senator Whitehouse. Thank you, Chairman. Let me join the
rest of the panel in thanking you and in thanking the Ranking
Member for having yet another hearing on this issue and
continuing to persist for results. This is so important.
Ms. Vandenbroucke has Max. I had Martha, and it was the
exact same situation. She was a very, very proud lady. She was
determined that she was going to go out on her own terms, and
she had her advance directives and everything else laid out,
but she passed away in Virginia. And at the time, if you did
not have a bracelet around your wrist that showed that you had
signed up for this very specific program, the exact same thing
happened. The EMTs came. She could have had her doctor, her
lawyer, her priest, her family, her advance directive all right
there saying no and the EMT would have said, well, tough bounce
to all of you. We are doing what we are doing and we do not
care. And they were legally obligated to do so. It is not
because they are cold-hearted people. So fixing that, I think,
is very important.
And we are working on MOLST in Rhode Island. Maureen Glynn,
who used to work for me in the Attorney General's office, is
leading that charge and is doing a terrific job and we are
trying to get it through the Health Department right now. I
want to thank particularly our Catholic Diocese, which has been
extremely productive and helpful in the MOLST. Ms.
Vandenbroucke says POLST for Physician. We call it MOLST for
Medical, but it is the same idea. The Catholic Church has been
very, very productive in this discussion, has been very, very
helpful, and in a State as Catholic as mine, it makes a big,
big difference.
And so keep doing what you are doing. If there is more that
we can do to push this forward, give us advice, I am directly
involved in that process in Rhode Island and I would love to be
helpful in any way that your organization can give us advice.
And thank you for reminding us, Ms. Warshaw, about the
conversation. It is important to have. And I will reassure
people that I have had it on both ends and I do not think it is
that bad of a conversation. Kind of screwing up your guts to
raise the subject is the hard part. Once you start talking
about it, it tends to bring a cone of trust and of affection
and of family reciprocal loyalty out in people.
And so I do not think it is a conversation that we should
be the least bit scared of or dread. In fact, every time I have
talked to somebody about the conversation, when they are done
with it, they feel way better than beforehand. It is not
something where you walk away from it thinking, oh, that was a
real ordeal. It is the exact opposite of that. It is a good
thing for families to have that conversation.
We are in an environment here where we can observe that
most people who die are old people. Most old people are on
Medicare. Medicare will have a lot to do with how these
decisions get made at the end of life. And we are also in a
political environment in which something as vile and pernicious
as the death panel notion was able to actually get traction and
frighten people that there might actually be such a thing.
So what do each of you think would be the simplest,
clearest, and most hobgoblin-proof improvements that we could
make to Medicare, either by changing the law or by pushing the
administration to make administrative changes, that would be a
step forward in this direction, maybe not the final step
forward, but a doable, clear, simple, non-controversial step
forward? And quickly, because my time is running out.
Ms. Warshaw. So, since we are at the beginning of the food
chain on this discussion and we are really interested in a
whole cultural change, not just some----
Senator Whitehouse. We cannot do cultural change that
quickly, with a simple change. What can we do that is simple
and clear? What can we push for? What is the first step?
Ms. Warshaw. Well, then I would suggest working with health
systems to put the starter kit in every primary care
physician's office.
Senator Whitehouse. Okay. Ms. Vandenbroucke.
Ms. Vandenbroucke. I would say--I know it is not
necessarily non-controversial, but promoting that conversation.
As Mr. Towey said earlier, the advance directives in some
States, you need a Ph.D. to understand what they are saying and
what they are asking for, and really, unless you have the
conversation with a health care provider about what your
options are, you are going to be believing that if you have
CPR, or if you need CPR, it is going to be a couple of presses
on your chest, you are going to be fine, because TV shows 75
percent of people that have CPR on TV walk away, when the
reality is it is more like eight percent. And so people just do
not even understand simple concepts, much less----
Senator Whitehouse. We rewrote ours in Rhode Island because
they are usually done when people are drafting their wills.
Ms. Vandenbroucke. Yes.
Senator Whitehouse. So they are written by lawyers and for
lawyers. Well, lawyers are not going to read them. Doctors are
going to read them, and doctors speak a different language than
lawyers, so----
Ms. Vandenbroucke. Exactly.
Senator Whitehouse [continuing]. We changed it from
lawyerese to doctorese, and that helped at least a little bit.
My time is expired, so let me just ask if you could reflect
on my question as to what simple, clear steps would be that
would be a good step forward, that are achievable in an
environment in which the notion of a death panel might actually
take footing, and just get back to us, because I do think
that----
Senator Warner. Share it with all of us.
Senator Whitehouse [continuing]. We very much want to work
together on this issue. This is a truly bipartisan issue and a
truly human and humane issue, and I appreciate the wonderful
work that you are all doing to advance the cause.
The Chairman. I always learn something from Senator
Whitehouse, and today, I learned this beautiful turn of a
phrase. Cone of trust.
Senator Whitehouse. Modeled on Maxwell Smart's cone of
silence.
[Laughter.]
The Chairman. Senator Ayotte.
Senator Ayotte. Thank you, Mr. Chairman.
I appreciate all of the witnesses being here on such an
important topic, and I know that there was a question asked to
some extent when I was out of the room on this, but what I have
heard from some of my concerns from constituents is that they
have a situation where they either have two homes or they are
traveling to visit a family member. Where they have an advance
directive, they are worried that if--I have heard some,
frankly, really bad stories about people who had advance
directives, but one State did not respect the advance directive
of another. And I know that some States do have some
reciprocity, but what is it, in your view, that we could help
make sure, not even--that States would respect the decisions
and making sure that it is--the advance directive is drafted in
such a way that there is some universal recognition?
If you could help me--I know you may have already answered
this, but this is an important issue that I think if we are
going to respect people's wishes in this regard, you know, we
are a mobile society and there are too many of these stories
and we never know when something is going to strike someone.
Mr. Towey. Well, Senator, I think you have raised a very
important issue, which is being able to carry your--nobody
travels with their advance directive unless they are really on
top of things. So Five Wishes is a national document used in 42
States. Eight States, of course, have language that requires
you--and their statutes require you to use their form. But you
still have the Patient Self-Determination Act, which provides
individuals this right as a Federal right. It has not been
tested in court. Who wants to be a test case?
But it is our view, as an advocate from the consumer
standpoint, without any stake in the health care financing
system, it is our view that they should be able to write it on
a paper bag, their wishes, if they wanted to. It is not an
effective way. It is not a good way. But it brings out the
rights of individuals to communicate their wishes the way they
would like.
So I think what the Federal Government could do is renew
its point that the Patient Self-Determination right supercedes
State statutes that are limiting an individual's exercise of
their Patient Self-Determination right, at least as it applies
to Medicare and Medicaid. You are paying for it. Why could we
not see these States that have these mandatory forms recognize
if they do not get with the better practices, they will lose
their Federal funding? But until you do that, you will have
this fractured system in place.
Now, people with Five Wishes, fortunately, can travel to
most States. But a lot of places, you run into horror stories,
where individuals did not have their advance directive and a
State will say, well, we do not honor what you have. You did
not fill out the State form.
Senator Ayotte. No, I appreciate that. I do not know if
anyone else has anything to add on that.
One of the issues is we have talked a lot about, certainly,
this issue with regard to end-of-life decisions when it comes
to the elderly, which is, I think, very important to all of us.
I am blessed to have a 97-year-old Grandfather and a 96-year-
old Memay [phonetic] that are still with us, and, frankly, the
sharpest people in the family when it comes to what is
happening in the nation's capital.
But I think that one of the issues, when we think about it,
this is not just an issue of impacting the elderly--we are here
in the Aging Committee--but how do we start this conversation
with people throughout their life, even younger people? You do
not want to think about, obviously, when you are young,
anything happening to you, but tragedies can happen at any
moment in life and so this is sort of part of the life
continuum.
And so I just wanted to get your thoughts on--it is kind of
like we are getting to the point where you are older and we are
going to have this conversation, and it almost becomes a harder
conversation because we are not incorporating that for some
younger people in younger situations that can find themselves,
obviously--none of us wants to think about this, but all of us
want to make sure that our wishes are respected.
Ms. Warshaw. So, one of the ways that The Conversation
Project is addressing this is recognizing that we need to start
the discussion with people where they work, where they live,
and where they pray. And so we have been working with employers
to have this conversation with their employees, no matter what
age they are. We have brought together in Boston 20 faith-based
leaders, actually, two weeks after the Marathon bombing, and
had an extraordinary working session with them. Together, we
are beginning to develop a faith-based strategy for Boston that
encompasses every faith being represented and universally, not
by age, bringing it to the faith-based communities.
So, I think that you are right. As we learned in Boston,
you get up in the morning and you do not know what is going to
happen. And so we are trying to bring this concept, and that is
why I say it is a cultural change, and we are hoping that we
promote the day after Thanksgiving as ``Talk Turkey'' day with
your family, when everybody is around, to have the
conversation.
So, if the government with Medicare would like to be a
partner in this media campaign with us, we would love to have
you as our partner.
Senator Ayotte. Thank you. I appreciate you all being here.
The Chairman. Having been whipsawed on death panels and
having gone through the experience of a Floridian, Terri
Schiavo, I would think that younger people would want to go
ahead and complete an advance directive. But, of course, we see
the opposite in the statistics that you have given us.
What do you think, is it human just ``put off until a later
day'' kind of attitudes that is preventing us from having these
discussions, and also of actually executing advance directives?
Tell us what you think.
Ms. Vandenbroucke. I heard about a book recently, and it
was written by a young woman, and it was something like The
Things That I Didn't Know I Needed to Know as an Adult. And I
think with advance directives, at least in my experience, being
somewhat still young, people just do not know and they do not
know the laws.
I was in-house counsel at Oregon Health and Science
University and one of the things that surprised a number of
people is that the Oregon law, once you hit 18, there is no one
that is legally designated to speak on your behalf. They expect
you to fill out an advance directive to say, this is the person
that can speak for you if you are incapacitated, and people
just do not know that and they are not thinking about it.
So, trying to get people aware of truly what can happen to
them is, I think, something that can be an eye-opener, having a
good story and just kind of communicating it that way.
Mr. Towey. Senator, not only taking it to the workplace,
and also, when you talk to young people--I am at Ave Maria
University--the last thing they are thinking about is their
mortality. So, one of the things that we have done with young
people that has been helpful is to say, if you want to be a
good son or daughter, have you talked to your parents about
what they want so you can be there for them when they need you
the most? And that has been effective to a point, because they
do not mind getting in the face of their parents.
And the real problem, when you look at the numbers in the
Medicare and the Baby Boomer population, that group is going to
live forever. Mick Jagger is going to be holding rock concerts
until he has to have both hips replaced, and so they are,
thankfully, joyfully forever young. And so trying to get the
Baby Boomers engaged, I think, is even a greater, more
important challenge for Congress, because they are the ones
that are the consumers and so many of them do not have this.
And they have also--I put in my testimony, their profile
health-wise is terrible. They are failing relative to previous
generations on their health. So they are going to be needing
more expensive care, more frequent care, and yet they have not
even communicated their wishes. So we find that getting the
kids to go to their parents now has been an effective strategy.
But I think, lastly, is the faith community. They do not
have any skin in the game, so they are able to speak with a
voice that is unbiased, that is not tainted. There is no
perception of a conflict of interest. Certainly, getting the
leadership of our faith communities engaged in this discussion
would be very helpful.
The Chairman. And how do you take the information from a
form such as Five Wishes and get this transferred over to Ms.
Vandenbroucke's form that actually has the doctor executing?
Mr. Towey. Well, in States that have POLST, you certainly
want to communicate to individuals, particularly if they are
sick when they are filling this out, that they should know
about POLST. We, of course, talk about DNR, but that is not
enough. POLST is much more comprehensive.
So what you would like to have, Senator, happen, is first,
the advance care document filled out. That is your legal right.
The discussion with your health care surrogate who knows
exactly what you want, including issues related to POLST. And
then, third, in your medical discussion with the physician, it
is the physician, too, who should be bringing up the POLST
discussion. Do you have an advance care directive? And have you
had any discussion about POLST? So, hopefully, that is how the
sequence would work.
Ms. Vandenbroucke. And I would just add that the next step
is then putting it into the medical record in a way that it is
easily found at the time of an emergency, because if you have
the forms and we cannot find them, then they do not have much
value.
The Chairman. And, of course, if we can get HHS to require
this in the annual Medicare visit, that is just going to all
the more add to the conversation.
Does anybody know why HHS would not put that in? Is it
money?
Mr. Towey. I can speculate that I think they are fighting
about getting anywhere near the death panel issue again.
The Chairman. Ah.
Mr. Towey. And so I think until--if ObamaCare is fully
implemented, I think there is a fear that it will get derailed.
The discussion will get diverted. So I think there may have
been a reluctance on them to engage. That is just my
speculation. Gloria or others may have a different point of
view.
Ms. Vandenbroucke. No, I agree with that. That is one of
the grassroots efforts, I think, of most States that are trying
to develop or enact the POLST Program, is reaching out to
health care professional facilities who have EMRs, like Epic,
and get them to modify it in such a way that you have a header
like the one that is on the last page of my written testimony,
where you can easily click on it. But they are having to do
that more on a case-by-case basis.
The Chairman. Ms. Warshaw.
Ms. Warshaw. Yes. I would just add that if we require our
physicians to do this, we also need to educate them, because
otherwise, it will just be a checklist. There will be a check-
off and there will not be a really robust conversation. And it
is the subtleties of that robust conversation that influences
whether your real wishes are implemented.
Ms. Ramsey. And I would add, in addition to the physicians,
to the Advance Practice Nurses, the Doctors of Nursing
Practice, the other health care professionals.
I did want to comment in terms of the earlier comment about
engagement of younger persons. One of the things that we are
really seeing is that when you think about health disparities,
the burden and incidence of disease among minority populations,
whether it is cancer, cardiovascular disease, and the like, the
burden of disease is taking its toll. And so the idea about why
these conversations are particularly important is one that
really has helped to upstream the conversation.
So albeit the Karen Ann Quinlans and the Nancy Cruzans of
the world were much younger, what we are finding with our work,
because of the burden of disease and the lack of access to
health care and the like, that we are seeing individuals who
are living with chronic diseases and that we are forced--or at
least it allows an opportunity to have a conversation, which is
really providing access in a way that we have not seen in the
past.
The Chairman. Senator Collins.
Senator Collins. Thank you, Mr. Chairman.
As I have been listening about the debate on the discussion
today, I thought of the fact that filling out a POLST order,
for example, is very different at age 18, which was the point
that Mr. Towey was making, than it is at my age or my parents'
age. And I do not know that we should be encouraging college
students to fill out advance directives and POLST orders. I
mean, I could easily fill this out now, but when I was at age
20, my answers would probably be totally different than they
are now, and Mr. Towey, I think, was trying to get at that
point when he talked about when this should be used. And, Ms.
Vandenbroucke, you did say it was in most cases when someone
would have less than a year to live or something like that.
But talk to me about this issue and when we start, Mr.
Towey, and go down. I mean, should this conversation that Ms.
Warshaw has talked about, Professor Ramsey has talked about--is
not this conversation a different outcome depending on how old
you are?
Mr. Towey. Yes, Senator. I do think that individuals that
are older, it is a more immediate question and they have a
different perspective, different values. And so one of the
things that we see in advance care planning is individuals
change their Living Wills all the time, or they go to their
health care agent and they say, ``I have changed my mind.''
I just saw a friend that had a bad experience. I do not
want that to happen to me. And so you will see changes, which
is why I believe POLST has great promise, provided that it is
used and kind of limited to the situations for which it was
created, which is in the face of imminent health difficulty,
serious illness, so that it is not seven years later that
something you said after a car accident is being applied to you
now that you have had a minor stroke.
So we urge there to be time limits on POLST for when it is
written, and also the physician who is having that discussion
with the patient, that there be documentation so you know who
did it, so that there is a verification that this was done with
the free, voluntary assent of the individual, because as Gloria
has mentioned, many groups feel pressured, coerced, and
inadequate to those conversations with a physician.
Senator Collins. Thank you.
Ms. Warshaw.
Ms. Warshaw. So, as I said, we are at the beginning of this
discussion, and so what we encourage people to do is to speak
with their loved ones about what their values are and what they
want their end-of-life to feel like or look like, not
specifically what tests or what type of health care they want.
So it will change over time, and I think if you had asked
Ellen what the perfect name for our organization would have
been, she would have said ``The Conversations Project,'' but it
is too difficult to say. So we recognize that this is just the
beginning and it is a lifelong conversation.
Senator Collins. Ms. Vandenbroucke.
Ms. Vandenbroucke. Yes, so you are correct that the POLST
form really is for the end-of-life and the focus is, earlier on
in life, I think, completing that advance directive. And I
think it is worth having the conversation early on because you
just do not know what is going to happen. And as long as you
have the conversation, even if the form is never filled out,
you have a general sense of what your family member would have
wanted.
With respect to the POLST form, it is almost--I know that
some States view it as a medical error if you fill it out too
soon. So, one, this is a form that is initiated by a health
care provider, not the individual.
And, two, if a health care provider gave me a POLST form
and said, ``Fill it out,'' or said, ``I want to fill out this
form for you,'' that is completely inappropriate because this
is putting a medical order into place that--well, one, if they
are mandating it, that is a problem, but it is setting up for
medical orders that would not be appropriate, because I am
young, I am healthy, and I would want full treatments
regardless, and that is what the law already provides for. So
this is--it is something that would be reported to a board for
a serious infraction if people are misusing this form.
Senator Collins. Ms. Ramsey.
Ms. Ramsey. And I would only add that for the younger
individuals, advance care planning is a process. It is not a
one-shot deal. And so the idea about lots of your values, your
attitudes, and your preference about other things are actually
also addressed as we are having the advance care planning
conversation. As my community member said, ``If I were to step
outside and get struck by a car, who would that person be that
I would want to be there at my side to be the advocate for me,
to be the navigator for me while I am hospitalized and
receiving care?''
So I think that, certainly, the end of life is along that
continuum, but I think there are lots of advantages for
engaging early, and that is what we have seen.
Senator Collins. Ms. Ramsey, just one final question,
because you have just touched on an issue I wanted to raise,
and that is I have heard so many stories and have seen friends
where family members cannot agree and have very different views
on what should be done and the patient is too ill to give
direction and that conversation never took place. So you have
made the very good point about making sure that there is
someone who can make the decisions for you, but should that
always be a family member necessarily?
Ms. Ramsey. Not necessarily, and I think that when I use
the Five Wishes document in our work, one of the things that is
expressly stated in the form, that it need not be a family
member, because sometimes family members are not the best
person. And so that is an important conversation, that it need
not be your spouse or your oldest child, but rather it should
be someone who is going to be able to articulate your
preferences, is comfortable with that, and really is available
to you, among some other criteria that would be helpful to
consider. But, no, not necessarily that it has to be a family
member.
Senator Collins. Thank you, Mr. Chairman. Thank you.
The Chairman. Senator Whitehouse, you have a request.
Senator Whitehouse. Mr. Chairman, I just wanted to ask
unanimous consent that the opening statement I had intended to
give if I had been here on time be included in the record as if
I were.
[The prepared statement of Senator Whitehouse follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
The Chairman. Indeed, without objection.
Are you in your cone of silence?
[Laughter.]
Senator Whitehouse. No, I am prepared to yield to Senator
Blumenthal.
The Chairman. Senator Blumenthal.
Senator Blumenthal. Thank you, Senator Whitehouse, and
thank you, Mr. Chairman.
I wonder--for the panel, I appreciate all of you being here
on this very profoundly important topic. Connecticut, as you
know, has taken a number of steps in this direction, and while
I was Attorney General of the State, I supported those efforts,
options for patients to provide instructions or to appoint
someone to provide instructions to physicians, family members,
and others about care choices. We thought this was especially
important, and Connecticut helped to lead, when patients are
unable to express themselves on these issues, and planning and
preparation, and the term ``conversation'' was not quite as
much in vogue as it has become today, so we thought there ought
to be talks and discussions and family meetings and as much
frank, good talk about this as possible.
But there are also a lot of legal complexities surrounding
these issues, and I have looked over some of the examples
provided for options for end-of-life planning and advance
directive and the Five Wishes form and so forth. I wonder, what
options are available to enable people to better understand the
governing law of their States, whether that is something that
needs addressing. Obviously, people are not going to want to
pay a lawyer, understandably, to do this for them, and most
cannot afford a lawyer. So what options are there for
furthering public understanding in the face of what they may
think are legal complexities?
Mr. Towey. Senator, it certainly has been the province of
law firms often to provide a Living Will as part of their
estate planning practice, and that has been somewhat effective,
although they typically use the State form, so there is not
really a useful document in play to begin with.
But worse than that is the fact that most individuals who
are poor, disabled, have no access to an attorney in the first
place, and so we have been out there promoting the use of Five
Wishes, make it--I think it is a dollar each for 25 or more--
for faith communities, for financial planners, but also, you
know, parish nurses, other individuals that are in the
community itself, the aging centers, to be able to go upstream,
reach individuals.
And then our document is meant to be educative. It is meant
to kind of help them understand what their rights are. You have
passed, or Congress has passed the Patient Self-Determination
Act. No one knows what is in it. It has been over 20 years. So
that is why one of my recommendations was a renewed voice by
Congress on the importance of advance care planning.
I think when you deal with elderly in nursing homes,
Senator, typically, when I go to a nursing home, I always ask
at the front desk, how many people here have no visitors ever,
and you get over half is the answer. So when you start talking
about advance care planning for that population, you run into a
whole different set of circumstances. Then you layer on
depression, which is not uncommon for individuals as they
approach death.
So as we educate families about their rights, one of the
most important rights is to identify individuals who can be
health care surrogates, maybe someone from their church, maybe
the local community, that comes into a care setting like that
and says, I am going to be helpful and befriend and visit those
individuals. That would help them exercise their right.
Senator Blumenthal. Thank you.
Any other responses?
Ms. Ramsey. One professional organization, the National
Hospice and Palliative Care Organization, has a myriad of
resources that are consumer-friendly in their initiative called
Caring Conversations, and that has been one of the places that
I have been able to, certainly, advise patients and families to
also consult with. Not only is the directives from each of the
States, whatever type of directive that State recognizes,
whether it is a Living Will or a Durable Power of Attorney for
Health Care, but they are both there, as well as instructions.
And what they have also developed is a series of documents,
pamphlets, that are really developed for consumers that is
helpful for individuals to begin the conversation as well as to
help them understand, well, what is life-sustaining treatment,
you know, what does that look like, and the like. So that would
be one of the examples that I would offer.
Senator Blumenthal. And I note that a number of the experts
in this area have said that physicians are sometimes reluctant
to address these issues, for whatever reason. Are you satisfied
that physicians are, in effect, accepting the need to raise the
issue proactively with their patients and persuade them to make
some of these decisions and enlist others to do so?
Ms. Ramsey. I think in terms of medical schools across the
country, nursing schools across the country, it is certainly
something that we are getting better at. I think, as Ms.
Warshaw said earlier, physicians and providers are waiting for
patients and patients are waiting for providers, and that
disconnect there really does give rise to a delay in time that
is important to really begin the conversation. So in terms from
an academic perspective, medical schools and nursing schools
are really eliciting this content in terms of--into the content
of the curriculum--excuse me--so that we can begin to help
individuals role play in how to begin the conversation, how do
you break bad news so that it is not as difficult as it is.
And, lastly, it is another opportunity why the consumers,
the lay individuals, need to be informed, so that they can be
supportive in bringing the conversation up, as well.
Ms. Warshaw. I think we are experiencing a conspiracy of
silence about discussing end-of-life issues, both from the
medical community and from the public at large. And just like a
generation ago when my parents would not use the word
``cancer,'' or we would not talk about gay rights, or there was
no such term as ``designated driver,'' there has to be a
cultural shift recognizing that this is a necessary adult
responsibility of all of us to talk about what kind of care we
want at our end of our life, because death is not natural
anymore with the enhanced technologies that we have.
I would like to also add that the Institute for Health Care
Improvement, where The Conversation is housed--which we are
very appreciative of--is in the process of developing a
curriculum in their open school program, which means it is
online and free, all about The Conversation Project and how to
begin having this conversation, and that is geared for
interdisciplinary health care teams.
Senator Blumenthal. Well, I thank you very much. My time
has expired, but I think the term ``conspiracy of silence'' is
a very strong one, and I do not dispute it because I have no
factual basis to dispute it. But I would have hoped that we
would move beyond that, but I gather this panel feels that we
have not and that is a very important call to action for all of
us who are involved, which really means all of us, because we
are all going to be there and all of us will have relatives,
loved ones, friends, neighbors, who will be there, as well.
So, I thank you very, very much, and thank you, Senator
Nelson and Senator Collins, for having this hearing.
The Chairman. Thank you, Senator. You are a very valuable
member of this committee and you bring a great perspective as a
former Attorney General.
Ms. Ramsey, minorities--it was stated here that there are
disparities in the minority communities about advance
directives. Expand on that a little bit.
Ms. Ramsey. One of the things that we have found is that--I
think it was stated at the onset that most times, we think of
completion of advance directives as to refuse intervention. And
for some, refusal is not what they are interested in. The idea
is that, for many, there have not been access to health care,
access to services, and that, finally, we do have access and
now you want us to limit it or refuse it. Completing advance
directives sometimes is perceived as being that you are going
to be abandoned, that the care that you are getting, you are no
longer going to get any of the care. And so that is part of the
notion or the background about minorities and completion of
advance directives.
Similarly, about eight percent of minorities utilize
hospice services. That is a very small number as compared to
the majority at 82 percent. That eight percent has been pretty
static over--too long. And so the idea about individuals having
access and knowledge about these services and to know that you
can accept or you can refuse them, but at no time will you be
abandoned and that your pain will be appropriately assessed and
managed.
The Chairman. You have been involved, Professor, in the
Veterans Advisory Council on End-of-Life Care, and you know
about the concerns about how advance care planning has been
handled with our veterans. In your experience, tell us about
your work with the Advisory Council and how these issues are
raised with veterans.
Ms. Ramsey. Yes, sir. In terms of that particular Advisory
Council, and recently, I completed an end-of-life nursing
education consortium training for veterans, the idea is that
many individuals who have served our country are not
necessarily dying in places like the VA or where individuals
are trained in caring for veterans. And so the idea was that if
individuals who served our country are in other acute care
settings across the country, in hospices, that what are some of
the things that would be important for providers to know as
they transition, as they prepare for dying.
And so it has been important for us to recognize that there
are some particular considerations, if you will, for persons
who have served and what we can do to make their dying
experience meaningful and valuable, as we have done for others,
but also appreciating that they have served our country.
The Chairman. Thank you.
Ms. Vandenbroucke, explain for the record the difference
between the DNR form and the POLST form.
Ms. Vandenbroucke. Thank you. The DNR form focuses just on
resuscitation and the POLST form goes further and most States,
it is a Section B, by saying, if you do not have an issue with
resuscitation, what are the other things that you want at the
end of life?
So there are generally three options. You want comfort
measures only, meaning that you want to allow natural death.
You do not want to do anything to prolong your life. Limited
additional interventions, which means that you would like
things done. You might be in the ICU for a little bit, but you
will get antibiotics and other treatments. Or full treatment,
which is you want everything.
And so this form goes a little bit further in asking those
types of questions, whereas a DNR is generally just the one.
The Chairman. Well, we have heard that sometimes patients
with the traditional DNR, they get less treatment geared to the
patient's comfort, palliative care, but studies have shown that
patients with a DNR order on a POLST form get more palliative
care. Is that true?
Ms. Vandenbroucke. Yes. There was a study that was done by
Susan Hickman that was published in 2010 in the Journal of the
American Geriatric Society that spoke to this, and she was
essentially saying that POLST forms were highly associated with
people making decisions about what they wanted at the end of
life. And so when you had more orders that had greater
specificity, you had a greater sense that this is what the
patient wanted, whereas with DNR, generally, when people are
seeing it, that that was just kind of treated as a way of just
not providing as much care. They were interpreting it that the
patient wanted less aggressive treatment done, when that may
not have, in fact, been the case. And with a POLST, that was
additional information about the level of care that the patient
wanted in addition to the DNR.
The Chairman. In the case where some physicians fill out
the POLST form without involving the patient in the discussion
of their goals and wishes, is there any evidence that any of
you all know that this, in fact, has happened? It is not
supposed to.
Ms. Vandenbroucke. It is not supposed to, and I do not have
any evidence of it. Most of the States do require signatures of
the patient or the surrogate. Oregon happens to be one of the
unique ones where we are just recommending that the signature
occur. But the expectation from the program is that this
conversation is occurring. The POLST, as I said at the
beginning, is not just a form, it is a conversation, and the
form is only as good as that conversation.
The Chairman. Thank you very much.
Professor Ramsey, I want to go back to the previous
question. There was the suggestion in the VA that they were
creating death panels. What do you know about that?
Ms. Ramsey. I do not, sir.
The Chairman. Okay. I want you to ask about that the next
time you are in the Council.
Mr. Towey.
Mr. Towey. Mr. Chairman, as you know, back in 2009, when
the VA floated a document called ``My Life, My Choices,'' there
was controversy around it. The concern for the poor and the
handicapped and others that feel mismatched to begin with is
when a huge provider of services is also very anxiously trying
to discuss it, it can be--to discuss the issue, advance care
planning, they could have a serious conflict of interest,
because they also are under tremendous budgetary pressure to
save money.
That does not mean we should be funding every last bit of
care every individual wants, and, in fact, most people do not
even want that care at the end of life. They do not. If you ask
people, do they want their last three days spent that way, they
would say no. And so part of advance care planning is for them
to say, I want it in this situation, but I do not want it in
this situation, the same as POLST would allow.
The problem when the health care community directly, such
as VA, or secondary, such as a reimbursement scheme of Medicare
or Medicaid, when they are leading the discussion, people are
suspicious. They are frightened that what you are really trying
to do is cut costs, and they are saying what is really better
for you is to go straight to palliative care when, in fact,
your treatment plan in front of you, curative care, could lead
to a recovery. So that is why I think the VA has to proceed
very cautiously when it seeks to promote end-of-life
discussions.
The Chairman. And, of course, the subject of this entire
discussion, advance directives, could alleviate any of these
questions about whether or not there are going to be death
panels. And, of course, if it is appropriately authenticated
and signed with an order, with, as you said, Ms. Vandenbroucke,
the patient's signature on there, as well, then I think it
starts to alleviate a lot of the concern.
Senator Collins.
Senator Collins. Thank you, Mr. Chairman.
I do not have any more questions for this panel, but I want
to thank each member for your very informed, insightful, and
intelligent discussion of this issue. Both the Chairman and I
are truly committed on this issue, and I think it is really sad
when this important discussion degenerates into slogans and
demagoguery, such as death panels, when it is so important to
each and every one of us. And I commend all of you for the work
that you have done, your research, the Five Wishes Program, the
other initiatives to elevate the discussion, which it deserves.
So, thank you very much, and Mr. Chairman, thank you for
your longstanding interest and work in this issue.
The Chairman. And with those very kind words, we both
extend a hearty thank you to all of you for an excellent
discussion.
The meeting is adjourned.
[Whereupon, at 3:53 p.m., the committee was adjourned.]
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